Reaching milestones without limits

The background

As a parent you always think your child is perfect, physically, mentally and emotionally. I would wager that for most parents once your baby is given the “all clear” upon delivery and are discharged from the hospital there’s rarely a concern about a child’s medical perfection.

That’s how we were with our daughter, Bailey. Once we left the hospital I never once had a concern about her medically (first time parent worries aside.)

Fast forward two years (roughly) and we find out we’re pregnant again – with twins! Say what now?! I don’t know who was more shocked, me or my husband (it was natural no IVF)! It took a long time before we were over the shock. Of course I don’t think we had too much time to process it before the doctors’ appointments started. Hello high risk OB’s! I was high risk. I knew that, based on our previous pregnancy it wasn’t a surprise when they said it. But this time it was different. Because of the “type” of twins we were having our risks went up. They are known as monochorionic, diamnionic twins – in other words they shared a placenta but had two separate sacs. As the high risk OB was going over risks and stats I kept thinking, “eh, he can spout all this info, but I won’t be in that super small pool of people to have problems.” Yeah…..at 18 weeks, we became one of those stats. The boys were suffering from twin-to-twin transfusion syndrome and I needed surgery. Twin B (Spencer) was taking too much from Twin A (Gavin) – or maybe Gavin was giving too much to Spencer, who knows. But the end result was that Gavin was suffering. After two hours on the table and numerous blood vessels cauterized, we were done. The hope was that they caught the problem early enough and no permanent damage was done to either twin – the odds were in our favor but only time would tell.

On October 12, 2013 Spencer ruptured his membrane and I went into premature labor at 31 weeks. Doctors were able to get my labor under control and I was now in the hospital on bed rest. Doctors wanted the boys to continue incubating and really wanted me to make it to 34 weeks. I wanted 34 weeks, 1 day as I didn’t want them born on Halloween.

After about 9 hours of labor on November 1, 2013 Gavin Michael was born at 1:39pm and on the same contraction, at 1:41pm Spencer Thomas was born. I barely got to see both of them before they were whisked up to NICU.

After a long two weeks, we got the news. The boys were coming home (and in plenty of time for Thanksgiving!) We go to pick them up and there’s a glitch. Spencer can come home. Gavin can’t. Standard procedure for preemies/twins is that an ultrasound of the brain be conducted – to ensure there are no brain bleeds. Spencer’s was clear. Gavin’s showed “something” – more specifically “grey matter” and an MRI needed to be conducted. So Spencer came home. Gavin’s MRI was slated for late night/early morning and he would be ready for us to pick him up at “check-out” the following afternoon (NICU typically discharges patients between 3 and 5pm).

I will never forget this day. We get to the hospital – Spencer in tow (Bailey was with my parents). As we finished scrubbing and entered the NICU, all the nurses, interns, and docs were watching us. The neurologist – whom we’d not yet met, asked if a room had been reserved to meet with “the family.” In that moment, I knew we were “the family.”

The MRI showed that Gavin had some damage to his brain. Likely a result of not receiving enough blood when he needed it (see twin-to-twin transfusion surgery note earlier on) and his brain didn’t grow as it needed. The doctor proceeded to tell us that we won’t know more until he’s older but to expect a lot of delays… or not. I clearly recall him saying, “Well to bring it down a level, it’s like when you find a spot on a lung x-ray. It could be just a spot, or it could be cancer.” And yes, he used the “C” word when discussing my 2-week old’s brain.

We were in a state of shock. It could be something or it could be nothing. Well, it is something. We just don’t know exactly what yet. For those of you reading this that know me, you know how hard it is for me to not have answers, to have more questions after each doctor’s visit and grow more and more frustrated after each appointment. For those that don’t know me well, think how you felt watching Lost.

He’s been to three hospitals, seen countless specialists and had numerous tests done (note: trying to take blood from a 4 month old with very small veins = not the best day of your life as a parent). Early on, and I mean around four months old or so, two doctors said they think he has cerebral palsy (CP). Since then, four doctors have said it’s way too early to make that diagnosis. Gavin is followed by a special team of neo-natal docs that see him every three months or so to determine his developmental progression and recommend services, devices, etc. The likely hood is that yes, he has CP – we just won’t know the extent until he’s older (hence not diagnosing now.)

So, where does that leave us? Other than frustrated beyond belief? As two amazing medical professionals have told me: “We treat the patient, not the diagnosis” so here’s where we stand:

He receives physical therapy and occupational therapy each once a week at daycare (his therapists are AMAZING!);

He continues to show progress each week;

And currently is not being recommended for additional PT or OT weekly

He will be evaluated for a speech therapist in December;

He does not have any hearing or vision loss;

He is extremely attentive – does NOT miss a beat;

He is extremely motivated – constantly kicking those legs and trying to imitate his peers;

Only Gavin will decide when he reaches a milestone. I’ve already decided that he will. All he gets to determine is the timeline.

Why write about this? Well a few reasons. For one, the Facebook posts I’ll be making on Gavin’s updates will be vastly different than those of Spencer’s. I certainly don’t owe anyone any explanations as to why but I also didn’t want people to judge him without knowing his story. I’m tired of keeping this entire experience a “secret.” We are all proud of him and his accomplishments and want to share those. He’s got a great group of cheerleaders but we want him to have more! I would also like to be able to thank all the amazing people (family, caregivers, doctors, friends) who have given Colin and I and our children so much support and love during all of this. Plus, talking is therapeutic!

I am also asking for your help. Again, for those that know me, I rarely ask anyone for anything – let alone something for one of my children. The idea that I can’t help my own child is beyond heartbreaking. But the reality is that Gavin is a special needs child and we need help.

It has been recommended by numerous specialists that Gavin get an adaptive stroller. The stroller will grow with him until he’s approx. 5 yrs old (at least that’s the goal – course the real goal is that he stops using it because he no longer needs it, but I digress). The purpose of the stroller is to help with his trunk and head control – without those he will never be able to roll, crawl or walk.

Equipment for special needs children is astronomically expensive and unfortunately insurance doesn’t help much – in our case only covering half the cost. There are grants – which trust me I’ll be applying for but not many other options. Our hope is that this will be the only device he needs, but the reality is that we just don’t know. He will likely need a stander and once he’s learned to bare weight on his legs, a walker – to well, help him walk. So, what I am asking is, if you are able to please consider donating to help cover the cost of the stroller and the other equipment he will likely need.

I LOVE structure! I thrive on it and when I don’t have it, my world becomes very shaky. Unfortunately structure and any planning goes out the window with a special needs kid. What I have to constantly remind myself is that this isn’t about me or Colin or even our other two kids. This is about Gavin and getting him what he needs when he needs it. Structure and plans be damned! He’ll decide when he’s ready to move onto the next milestone. To some extent this is out of my hands. So I can push and prod (as we all know I will) but we won’t be doing this my (or any doctors’) way. We’ll be doing this Gavin’s way.

Thank you for taking the time to read about Gavin and his journey so far and for any donation you are able to make. He’s got a long way to go but with the love and support of friends and family I know he’ll get where he needs to be.

2 Comments

Kate – I am a close friend of your neighbor, Marie Bossé. And my heart has been deeply touched by your post. I shall keep your entire family in my daily intentions. I have a child who teaches in a special needs school in Framingham, so I understand what you have written. I also have a good medical background so i ‘get’ this. When my life allows, I will send some token contribution – but my heart will be with you now and prayers and love follow you…from so many, I am sure. Please add me to the group.